Killian Kayne - CDH Support

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Sunday, December 8, 2013

Hello dear friends!! Hope you all had wonderful Thanksgivings. We sure did!!! This post may be brief in words, but I think sum up our family holiday with some awesome pictures!!

A couple of months ago, Lindsey, PaPa Garry and I decided that we'd do whatever it took to finally get Killian to Kansas for Thanksgiving to meet the Lambert side of the family (and the hundreds of adoring prayer warriors he has) in Neodesha, KS.

Here was the plan... I (Aunt Layna) would fly to Nashville. We'd rent a minivan. We'd load up Uncle Todd, Richard (Lindsey's AHHHH-MAZING boyfriend), Lindsey, myself and Mr. Killian and drive the 10 hours to the southeast corner of Kansas. We'd spend the week. Then Dad (Papa Garry) and Kerr-Bear (our awesome 2nd mom/stepmom) would drive them back.

I can only imagine that traveling with a "healthy" toddler is daunting, but I definitely know traveling with Killian was! Not only did we have all of the normal luggage, but we had to also pack up 5 portable oxygen tanks, a portable concentrator, his regular concentrator, his IV pole, his formula, all his meds and so much more. Good news is- with some master packing skills from Grandma Val and PaPa Barry in Nashville, we got it all to fit. On Saturday morning... we hit the road!

Killian was TOTAL ROCKSTAR the whole time!! Aside from a minor "I'm going to pee on everything" incident at our first gas station stop, he was a perfect travel companion. He just watched Bubble Guppies the whole time, checked out the scenery and took a nap. Guys, I can't even begin to describe to you what a good baby he is!! We had to stop at Lambert's Cafe (yup! our last name!), home of the "throwed rolls" for lunch. Even though Killian still get most of his nutrition from his feeding tube, he let us all stuff our faces on good old comfort food.

After 11 long hours, we were finally in Neodesha!! Again, Killian being the rockstar he is, got his own welcome sign at Pizza Hut (don't laugh-that's a big deal in Neody!!).

As exhausted as we were, that night of course our whole family came over to meet our little miracle. So many tears had been shed and prayers prayed. It was overwhelming to see him get to meet his aunts, uncles, cousins and extended family!

Papa Garry had more toys there for him than Christmas morning!

Especially his Spiderman 4 wheeler!

This is my Great Grandma Gerry!

He's always happy to see Kerr-Bear!

Meeting his Uncle Ronnie who is from Alaska for the first time.

Sunday morning sure was special...being able to take Killian to Dad and Kerry's church. It was such a blessing being able to present him to the congregation, worship the Lord as a family and watch him interact with so many people who love him!

Papa Garry introducing him to everyone.

Always the perfect gentleman in church :)

Meeting Great Papa Dave and Ma Peg (Kerr-Bears Mom and Dad)

The fun didn't stop there. Later in the week we took Killian to meet all the 3rd graders and awesome staff who were ALL wearing their Team Killian shirts at Kerr-Bear's school. They even made him a sweet welcome sign!! We sang lot of songs with them and they got a chance to ask questions and learn about other children with disabilities.

Singing "If You're Happy and You Know It" makes him a very happy boy!!

We got the warmest welcome!

A trip to Neody wouldn't be complete if we didn't take Killian to Papa Garry's work- Cobalt Boats. They have been beyond supporting of our family through alllllll of Killian's highs and lows (even once giving Dad and Kerry the private company plane to fly and see Killian). Plus, when Killian was REALLY bad in the hospital, Dad promised him all kinds of presents if he'd get his Sats up... a four wheeler, a car, and of course a boat :)

Boats and Hose- get it!! B/c of his cannual!

We also took advantage of being all together and had some pictures snapped by a darling friend, Caitlin Posch (who took them for free).

We're "showing our muscles" :)

Thanksgiving came way too quick, but could this little turkey be any cuter in his fancy bow tie???

We are just so incredibly blessed to not only still have Killian with us after he's been through so much, but to also have all of our incredible family and friends (that's you too!!) who have loved and supported all of us through it.

Please don't stop praying for all of those other families who are fighting CDH tonight!! We still have a lot of awareness to raise.

Tuesday, September 10, 2013

What's it like living with CDH? I wish I could ask Killian. But the fact of the matter is, at 20+ months old he can't tell me. He can't tell us what it's like to be connected to a tube so he can breathe because his tiny little lungs never got the chance to fully develop in the safe haven of his mama's womb. He can't tell us what it's like to get most of his nutrition from his "Mickey button" feeding tube in his stomach. He can't even say "mama" yet.

Praises to our Lord Jesus for what he can tell us which is that he is a HAPPY HAPPY boy who loves to laugh at Yo Gabba Gabba, he loves his family (and shows us with the sweetest open mouth kisses!) and through baby sign language can tell us when he wants "more", when he's "all done", when it's "my turn", and more!!! This beautiful ray of sunshine is the same boy who doctors gave a 5% chance of survival and assured us, even if he did make it, he'd be a vegetable. Man we serve an Awesome God!

I just spent the last two days in Nashville watching him crawl, pull himself up, and begin to get into normal toddler antics! His face lights up when you sing (and act out like a fool) "head shoulders knees and toes" and he is the sweetest, most cuddly little munchkin when he first wakes up in the morning. I'm blown away and so incredibly proud of not only him but Lindsey, too. She's so patient with him, always trying to work with him using techniques they learn in one of his many therapies.

******There really is never a dull moment living with CDH. He's had a couple of trips to the ER since our last post. And in the coming weeks Killian has to go in for yet another surgery to have his tonsils and adenoids removed in the hopes that it will help his sleep apnea and reduce his risk of getting pneumonia. Prayers are very much welcomed for that. We know our sweet boy will be in a lot of pain.********

So what's it like living with CDH? It's definitely no walk in the park- still some medicines, fear of reherniation, for Killian chronic pneumonia and all kinds of other not so fun things. Even family road trips are an event as we have to arrange pick up of oxygen tanks along the way. Gives a whole new meaning to "are we there yet?"! But it's also a daily reminder of God's love and an invaluable sense of taking nothing for granted. Like these special moments from my weekend...

After a long afternoon of shopping, tired boy fell asleep.Aunt Layna was trying to hold his head up :)

This was really my first time out in public with him for an extended period of time. He did so good!! He doesn't get fussy or anything!

Love this pic! Lindsey was cleaning his breathing tube so got this shot of his handsome face. BTW, he crawls to the door, pulls himself up and looks out the window all the time!

Little ham bone and me at Church! He loves to sing praises to the Lord!

Family Selfie!

Isn't he handsome!

LOVE LOVE LOVE this picture!!

We are so blessed!

I saw on the news recently that a family at a restaurant had a special needs child who was having a fit so the family packed up and ordered their meal to go. When they went to pay the waitress told them someone had taken care of the bill and gave them a note that read: God gives special children to special people. Ain't that the truth!

So if you are reading this from a hospital room right now, emptied out, petrified and numb because this thing called CDH has your little one in its grip, just know there is a community of CDH families praying for you, lifting your hands up when you can't and that through Christ there is hope! Hang on with all that is within you. You can survive this.

And if you are one of our CDH family members who has recently lost a cherub, there is absolutely nothing we can even mutter to console you. Please know that you are loved!

We love each and everyone of you. So thankful that you've joined this journey with us.

Tuesday, July 9, 2013

A year ago today...
Killian came home from the hospital!!He met his doggy cubby for the first time
He rode in a car for the first timeExperienced what it was like to really be outside
He slept in his own crib
He met his incredible nurses LeeAnn and Caroline
After spending 7 months in the NICU and never getting to be in the comfort of our own home, He got to come home with his Mommy and family!

So, what has happened since then?
Killian has had a few surgeries but they were back in October.We have been to the ER at the least 8 times.
Been admitted at least 5 timesHe has gone from being on more than 9 medications multiple times a day at discharge- to now, he is on only THREE medications!!!
he has gone down on oxygen requirements a little bit, he is at 1.5 liters now.
He has had multiple studies done like a sleep study (yet to get results), a heart cath, a broncoscopy, hearing and speech evaluations.
He goes to feeding therapy and physical therapy and hopefully soon speech therapy
Has got the "okay" from multiple doctors to not come back for a year unless we experience any problems including Neurology, Cardiology, Hematology, and Ophthalmologists.
HE CRAWLS!! and cruises along things he can hold on to.
Killian babbles and says a few words like Na-Na and Ya-Ya sometimes we get a Ma-Ma or Da-Da.

This is HUGE because at one point doctors told us that he may never come home and if he did that he would have severe neurological issues, for the neurologists to give us the year okay is AMAZING!
We are hoping the sleep study results will come back and say that we can continue to wean his oxygen now.
Killian has started eating by mouth,and what seems like to us A WHOLE LOT!! About 3 tablespoons around 3 times a day which means maybe the feeding tube can be gone soon.

Killian loves music, loves watching bubble guppies, yo gabba gabba, and mickey mouse clubhouse! He loves to swim in his little pool we got him. He experienced fireworks this Independence Day and likes them! He has gone to church with his family multiple times and LOVES clapping with the music! He has heard a live Irish band at an Irish restaurant and loved clapping with them too! He does a little bit of baby sign language. He may not speak much but he comprehends almost everything we say to him, he is SO smart!!

here are lots of pictures and some videoes

Some fun at Physical Therapy after Killian figured out how to crawl!

First time outside!

First walk!

First time at church (music was loud and startling)

Plenty of doctors visits

First official hair cut :)

Laughin and playin with Momma (sorry if you cant hear the sound)

One of my first times pulling up to something

Helping spread CDH awareness

Meeting other babies (this is mommy's best friends little girl)

Slept in many different awkward ways

Playing music

Sitting with Pap-Paw or "ya-ya" and my first cousin Myles!!

Church on Easter with Paw-paw and Ker-Bear

Spreading some more CDH awareness with my 'Team Killian' shirt.

Vanderbilt Children's Hospital's mascot Champ! (it was a long day of appointments he was tired)

Chillin' outside in my walker

Just being cute!

"#1 MVP"

Shaving Cream at Physical Therapy

And these next photos are from a local photographer that held a contest in January for 2013 New Years Baby and all of his fans on Facebook helped him win. :)

I want to apologize from the bottom of my heart that we have not been able to do an update since January. Layna has an amazing job an has been working hard lately and doesn't exactly have a whole lot of free time on her hands. And I (momma Lindsey) have been working, taking care of Killian's appointments and have just recently started college to pursue some kind of medical career!also I apologize that this post isn't as great as Layna's posts always were, and I'm being rushed because I have a class in an hour and trying to spend some time with my sweet boy on this amazing day! We are so grateful for all the prayers and thoughts and donations in the past and those that continue, I promise to start posting more often.

God has blessed us abundantly, every Sunday I just bawl my eyes out of gratitude of the healing power God has given to my little boy, and continues to! I have left a lot of information out so if you have any questions please please feel free to comment!!